It’s not often enough acknowledged just how devastating the effects of eczema or psoriasis can be for the families of those living with long-term skin conditions. Parents and siblings can find their lives turned upside down, with finances, mental health, sleep and daily routine all massively disrupted by the need to look after a child in great distress.
In this open and honest interview, we talk to company founder, Natalie Balmond, about how her family life was affected when her little daughter first started flaring up with eczema.
How old was Lula when you first noticed the symptoms of eczema and what were your family circumstances?
It probably started when she was about eight months old. We - me, baby Lula, her six year old sister Ellie and my partner Mark - were living in Stratford-upon-Avon for a year, while Mark was working at the RSC.
What was her eczema like at first?
It first appeared as patches of very dry skin behind her knees and inside her elbows. It seemed mild and not particularly worrying to begin with, and I thought it would be easily treatable with moisturiser. Unfortunately, it wasn’t to be!
How did her increasingly severe condition affect your daily life as a family?
Despite all our efforts to treat the dry patches with bath emollients and moisturisers, her skin got sorer by the week, and began to spread all over her body. Eventually I realised she had full-blown eczema and it was going to take more than having a bath with some oats in a sock to solve it!
One of the ways it first affected our family life was the amount of time it took to research the condition and try to find remedies! I was visiting chemists, doctors, health food shops, alternative practitioners all the time, and that was time-consuming and exhausting. It really affected how much energy and interest I had for ordinary life! And in turn that had an affect on the people around me.
How did Lula’s eczema affect her sister?
Her big sister Ellie was six at the time Lula first had eczema, and things didn’t improve dramatically until she was about nine, so a big chunk of Ellie’s childhood was overshadowed by her sister’s condition. We constantly had to make adjustments to our plans to take account of Lula’s eczema, navigating around what we could eat and what we could do. It must have been really hard on Ellie, not having her mom’s full attention and her daily life being so impacted by Lula’s distress and pain.
What sort of things couldn’t you do as a family?
Things like going swimming as a family were impossible. Certain physical activities would flare her up - even just playing outside, for example - and children’s parties and picnics were a minefield and ended up being horribly stressful for everyone. Even things like the fact she couldn’t sit still in a cinema for two hours without itching or crying made a huge difference what we could do together.
How did it affect your relationship with your partner?
It was really hard for both of us. I had no energy for anything other than taking care of Lula and my mind was preoccupied most of the time with finding a solution. This meant we just had no space to be a couple at all. We were both constantly tired from lack of sleep and we fought about things like who would do the night shift - comforting her in the middle of the night when she was having a flare-up. Mark had the space, when he was working, to escape from it, but I never got any respite. That made me resentful and angry; if ever he chose to do something other than come straight home to help, I’d be furious.
In retrospect, it’s fair to say that it was hard for both of us in different ways, but at the time I didn’t know where to put some of my emotions and probably ended up projecting my anger and frustration onto him. For a long time I felt like a failure as both a mother and a partner, because not only was I unable to help my daughter, I was also unable to contribute fully to my relationship.
What was the worst thing for you to cope with: the emotional toll or the physical exhaustion?
Emotionally, it was draining and exhausting to be constantly in the presence of a child who was in pain and suffering. She changed from being a jolly, happy little baby to a toddler who tore at her skin until it bled and was always crying. It really made me sad to see.
And of course, being woken up throughout the night, every night, had a detrimental effect on both my physical and emotional well-being! It’s very hard to separate the two, to be honest, but I paid so much attention to what Lula was eating and feeling that I didn’t stop for a moment to think about my own well-being. It didn’t even enter my head to consider if I was eating well or drinking enough water, so I must have been incredibly run down the whole time.
Have you got any practical suggestions for families who might be struggling with eczema in the family right now?
- Reach out to people around you who might be able to support you and give you some time to recharge, whether that means resting or spending time with each other!
- As much as possible, eliminate the things that you actually don’t need to be doing! Don’t give yourself a hard time if you’re not being the perfect parents, if you’re not pleasing others,or doing all the extracurricula activities that imagined perfect families do! It helped us enormously to scale everything back.
- Try not to focus on conventional milestones such as sleeping through the night; for us, expectations around sleep went out the window and we just wanted to find strategies to get to the morning in one piece! What worked for us was all being in the same room so we could instantly calm Lula before a flare-up took hold.
- Remember that treating eczema means taking all kinds of steps, not just applying creams and lotions. We tried elimination diets, household adjustments, battling dust mites, different clothing, bedding, toiletries etc. What we realised was that there was no one thing that magically made it better: it was a whole change of life-style PLUS using a totally pure emollient that made the difference in the end!
Just to end on a positive note:
One thing that came out of it for me was my absolutely ferocious drive to make things better for Lula. I put all my energy into finding out everything I could about eczema, researching possible solutions, and eventually ended up making Skin Salvation! Never underestimate how much parents can change the world!